Health Organization for Pudendal Education

Joe, hope your visit with Dr. Conway went well. I think they typically do the EMG testing but I don't know if the happens on the first visit. Did you have that done?

I hate the "it's caused by anxiety" diagnosis. Certainly it can make you anxious to have pelvic pain and I think anxiety can worsen pelvic pain but I think to say pelvic pain is due to anxiety is often just a cop-out because they are unable to figure out what the cause really is.

Violet

Some of these symptoms seem familiar to me. I self diagnosed myself with PN and GP referred me to Dr Baranowski who confirmed PN. Have had 2 nerve blocks, both were effective however the 2nd is wearing off now and the symptoms are coming back - but that's another story. From mid December I had some very strange symptoms... All of a sudden 1 afternoon, my whole body lit up like a Christmas tree... I wasn't in pain it was more all over body dizziness and imbalance, my ulnar nerves felt stimulated, I couldn't focus visually or think straight, it was bizarre. Sometimes I would get tinnitus and my ears would pop too, my neck and throat would feel swollen and I would start to sweat under my arms and my palms and my legs felt weird, almost cold and weak...

I realised that it seemed to be stimulated by me stretching the back of my legs in particular but also stretching other muscles in the legs and my back. If I did any kind of exercise like go for a run or even a couple of press ups I would get the same symptoms. Dr B referred me to a neurologist who did a quick examination - asked me to press his hand, pricked my feet - asked me if I could feel it etc and then declared me perfectly normal. The thing is my symptoms come and go and at that time they were gone... I felt quite frustrated by this as I was convinced there was something neurologically wrong but he said no, that it's basically anxiety!

I've now been referred to a "pain psychologist" who has explained that in cases of nerve damage, the autonomic nervous system sometimes starts to "take an interest", this is the system which is much deeper - check the internet. He said that he could help me get over it but it might take time as basically the "pain centres" in my autonomic system are on high alert.

Touch wood though, the symptoms see to be fading, I'm increasingly able to do stretches although can't do what I used to do yet.

Weirdly, the PN symptoms more or less went away whilst I had the above, but now they seem to be coming back. It's like the 2 cannot co exist...

Searching, I know someone with PNE who has dysautonomia. You might want to do some research on it.

Violet

Violet M wrote:Searching, I know someone with PNE who has dysautonomia. You might want to do some research on it.

Violet

Yup, I think that's basically it... Judging by what I'm reading on the web my symptoms are fairly mild and seem to be fading (I'm hoping). Still pretty disturbing though. I seem to suffer from random anxiety - which indicates that my sympathetic nervous system is affected. Dysautonomia seems to be a generic term though for anything up with the autonomic system

Hi Joe.

I'm sorry to hear you're dealing with such a big load on you. I can relate. I have really bad shin splints in my left leg and I can't put much weight on it. It's causing me all kinds of problems because I can't move around and because I can't sit, I am forced to lie down a lot. I'm getting weaker and weaker in my legs. It's extremely difficult. I hope and pray that you find an answer that can help you climb out of this descent. Hang tough.

Chris